Holly Taylor

Are the communities or clients that you work with aware of and informed about PrEP?

Overwhelmingly, no, they are not aware. I work with a diversity of women and organizations that serve women, including women who are at risk for HIV and those who are living with HIV; women experiencing violence; women involved in sex work; Indigenous women; marginalized women; and women who use drugs, among others. Many of these women are not aware of PrEP and addressing this is a huge priority for me. At every available opportunity, I let women and other health and social service providers know about PrEP. To me, this is a human rights issue. Women have the right to know what their options are. If they don’t know about it, they can’t pursue it. In my experience, once women know about it they feel entitled to it – and rightly so! It is my responsibility as an advocate, service provider, and educator to relay this information and advocate for access.

Do you take up the existing scientific evidence around PrEP for conversations with your community? What lessons have you learned in doing this?

Yes, I do take up and share the scientific evidence around PrEP in my discussions with communities and providers. I am as open and transparent about the effectiveness of PrEP as possible. I talk about how effective PrEP has been and quote the Women & HIV/AIDS Initiative (WHAI) resource on PrEP. We know that PrEP has proven to be over 90% effective at preventing the transmission of HIV when taken as prescribed. While studies where PrEP was tested for efficacy in cis-women found mixed results including some trials that found it was not effective, the women in these trials were shown to have not taken PrEP as prescribed. I highlight that PrEP needs to be taken for a minimum of 20 days to protect against HIV transmission in vaginal tissue and seven days in rectal tissue. This means it takes longer to be effective for vaginal sex than anal sex.

When I talk to women and providers about PrEP, the important challenge is to ensure that the information being provided is done so in the context of the social determinants of health, which impact the lives of these women, their HIV risk, and their access to prevention tools. Women have specific biological vulnerabilities associated with PrEP effectiveness and transmission, but also important social vulnerabilities that must be taken in to consideration when translating evidence.

When you have talked to your community or clients about PrEP, if any express an interest in using it, how easy is it for them to access it?

Generally, people are very excited to hear about PrEP! Unfortunately, it is not easy for women to access. Sometimes I feel like I am building up something wonderful for women only to negate their hopes when I tell them that it is not currently covered by Ontario's provincial pharmacare plan. Most of the women that we work with are on Ontario Disability Support Program (ODSP) and can’t possibly pay for PrEP out of pocket.

Another important issue that affects access is the healthcare provider. It is not always easy to find a healthcare provider to prescribe PrEP. This speaks to our role (in community-based organizations) to advocate for and educate about PrEP. We need to make it available both by making it free for women who need it, as well as by educating healthcare providers about it! In London, Ontario and the surrounding counties, people would typically be prescribed PrEP through public health units. While these health centres may screen people for PrEP, the limitations around access may mean that it is not a priority conversation. This should not be the case. I understand that people may hesitate to educate women on PrEP if they “can’t access it anyway,” but withholding the knowledge is not a solution. PrEP is a potentially life-changing intervention that women should have a right to access if they feel it is a good choice for them. An important part of the solution is for service providers to advocate for the province to cover the cost of this critical intervention and to support women to consider it and adhere to it, should they choose to take it.

Brook Biggin

Are the communities or clients that you work with aware of and informed about PrEP?

Yes, very! The knowledge level among gay and bisexual men in Edmonton regarding PrEP is very high, and growing. Through research carried out by the Edmonton Men’s Health Collective – a local, grassroots health organization run by and for gay, bi, queer, and trans men – we recently learned that about 75% of gay and bi guys in the city have at least a basic knowledge of what PrEP is. This is up from the approximately 60% of gay and bisexual men who indicated that they knew what PrEP is back in 2014/2015 (surveyed through the Sex Now Survey).

This is not surprising. Guys have been able to learn about PrEP through a number of channels: the Edmonton Men’s Health Collective has carried out a great deal of PrEP-related education and research through our social media platforms. HIV Edmonton featured PrEP in a recent HIV campaign. Queer media have also been very active in increasing awareness about PrEP – something we’re beginning to see in the mainstream media as well.

In fact, I would argue that the primary driver of knowledge related to PrEP is the community, not traditional HIV organizations. I think that queer men recognize that PrEP is a very effective HIV prevention option that addresses some barriers they are facing to HIV prevention. Because of this, they are actually pushing service providers to talk about PrEP, to understand it, and to advocate for it. I think some HIV service providers have been rather slow in wrapping their heads around the evidence available concerning PrEP and have thus been slow to respond in a way that ensures the community has knowledge of and access to it. So, I would chalk up our successes related to PrEP – and the increased knowledge and comfort we’re now seeing amongst service providers – to queer men pushing for it and HIV organizations responding, not the other way around.

Do you take up the existing scientific evidence around PrEP for conversations with your community? What lessons have you learned in doing this?

Yes, I do. I think that, ultimately, it isn’t very difficult to translate the relevant information regarding PrEP for community audiences (acknowledging my privilege as a person educated in a university setting). I mean, the evidence is not particularly complicated. Instead, I’ve found that a lot of the uncertainty that some providers experience in translating scientific evidence about PrEP for community audiences is not actually rooted in anything we see in the evidence. Instead, the uncertainty comes from bias against and discomfort with talking about “new” prevention technologies, particularly if those technologies don’t come with a rubber stamp that reads “100% effective for all people in all cases.”

It seemed like, for years, providers were hesitant to translate and share knowledge of PrEP based on a false narrative that we just didn’t have enough evidence yet. That is just not the case. Sure, based on the evidence, I understand that PrEP is indeed an imperfect intervention and there are some valid concerns worth addressing, but how is that different from any other prevention tools that we have at our disposal?

The nervousness or reticence demonstrated by certain service providers, CATIE included, to take forward-facing, evidence-based stances on PrEP and other newer prevention options is quite troubling. After all, we know that gay and bisexual men remain the most disproportionately impacted population in Canada as it relates to HIV (recognizing that we have significant gaps in data regarding HIV amongst transmen and women in Canada). We know that many gay and bisexual men are able to process and apply this type of information once they get their hands on it. We know that there is high interest in and eligibility for PrEP within the community. So, if we know all of this and we fail to act, that’s not just a missed opportunity, it’s negligent.

When you have talked to your community or clients about PrEP, if any express an interest in using it, how easy is it for them to access it?

In Edmonton, based on a mix of anecdotal evidence as well as research, we know that the interest in taking PrEP is extremely high. And, using the current draft Canadian guidelines as a measure, we know that many are eligible for PrEP. However, accessibility is limited. One issue limiting access is the lack of knowledge among healthcare providers about PrEP, leaving it up to the guy to initiate the discussion and educate their doctor. The other issue – and perhaps the most prohibitive – is cost. Only a very small subset of the guys we’re in contact with have been able to access PrEP given the fact that there is no public coverage for it in Alberta – and the fact that only a handful of top-tier plans amongst a select number of private insurers provide any coverage for it.

This indicates where we need to invest our energy. Our work as community organizers and service providers needs to be focused on the structural barriers to accessing PrEP, not trying to get guys at risk interested in PrEP – they already are. This means increasing knowledge/support among healthcare providers, ensuring there is an efficient process for people to obtain PrEP, and ensuring that PrEP costs are covered for all, particularly those who need it most. After all, if PrEP is only accessible to white, cis, gay men with a college degree and an upper-middle class income, then I don’t think we’ve succeeded.

Jessica Quijano

Are the communities or clients that you work with aware of and informed about PrEP?

Yes, I work with cis and trans men and transwomen engaged in sex work in Montreal and many are aware of PrEP. RÉZO was engaged in the IPERGAY study when it started, so our staff and clients have had access to a lot of information and resources about PrEP for some time. We also have resources related to PrEP that are really accessible to our clients. The people I see through my street outreach and through our drop-in evening centre also learn about PrEP through the healthcare system in Montreal. RÉZO is physically located in the gay village in Montreal where a lot of our clients work. The three health clinics in the area are really knowledgeable about PrEP and often talk to my clients about it when they go in. The doctors in these clinics have made it a priority to start offering PrEP to high-risk populations.

While my clients tend to be aware of PrEP, I do make it a priority to talk to clients about it, to further explain the evidence behind it, and help them to figure out the pros and cons. Unfortunately, it seems as though our clients are often offered PrEP simply because they identify as sex workers, not because they are actually good candidates for PrEP based on their true risk of acquiring HIV. For example, some sex workers use condoms consistently and are in a monogamous relationship outside of work. Just engaging in sex work is not enough to benefit from PrEP. It seems as though some healthcare providers don’t investigate a client’s real HIV risk, beyond their identification as a sex worker. Because of this, I do prioritize providing information about PrEP.

Do you take up the existing scientific evidence around PrEP for conversations with your community? What lessons have you learned in doing this?

Absolutely! As service providers, we have a responsibility to share the information that we have that will equip an individual to decide for themselves what HIV prevention tools to use. It is my role to provide enough information so that a person can see all sides and make a decision that is best for them. But, this does not end with information about the efficacy of PrEP. For the people that I work with, how PrEP works can be difficult to understand. Many people are also suspicious of the medical community and the implications of the criminalization of HIV non-disclosure are important for everyone, but particularly sex workers.

Doctors often will prescribe PrEP very easily to sex workers, but for many, this comes without comprehensive information or education about what taking PrEP over time might practically mean for them. This information is so important to empowering sex workers to make informed choices. What would be really useful is a resource, like a pamphlet, that talks about what it means to take PrEP in a sex work context.

When you have talked to your community or clients about PrEP, if any express an interest in using it, how easy is it for them to access it?

Access to PrEP in Montreal can be easy for some men who have sex with men who have a valid health card. However, the practical and social aspects of taking PrEP are often not explored enough (for example, taking a pill daily, pressure from sex worker clients to use PrEP, among others). For those clients who are not on social assistance or have private health insurance, PrEP can also be costly (it is not 100% covered, even in Quebec). For those of our clients who do not have a valid health card (and there are many), it is very difficult to access.

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